I'm back from my appt. in Baltimore. If you remember, my dr. suggested the D procedure, using minced juvenile cartilage. They guy in Baltimore totally put the procedure down saying that there wasn't enough evidence, etc. It was Dr. Campbell, btw, and I absolutely did not like his bedside manner. His first words to me were,"I'm very pessimistic."
Anyway, his take was that OCDs eventually lead to arthritis anyway and at this point my ocd's are to the point that there is no cartilage on my tibia or talus and very little joint space. So he said OCD/arthristis same thing in my case. His comment about the D procedure was that I'd need at least 4-5 packets and $5k each, the price he quoted. He said he wouldn't do it.
He said he would consider Distraction Arthroplasty, but gave me no info about it. He also said they would scope to clean up the scar tissue, etc. in my joint, but in his kind, caring , words, he said, "On an ankle as bad as yours it won't really matter."
I'm really discouraged and not sure what to do. He said he hopes I can hold out somehow until I'm 55 and "Maybe somebody will but a new ankle in you."
I see my dr. April 7th. I'm pretty sure he doesn't do distraction arthroplasty and I'm not sure I want to do the D procedure if it will take 4 or 5 packets and more importantly, my ankle joint space is so small it will just rub it away. Don't know how I'd find a dr. that does the fixator besides Rozbrach in NYC or Campbell/Myerson's office in Baltimore.
I haven't gone to Schon ONLY because my dr. did his fellowship under him and consulted with him on my case. Schon suggested the minced cartilage. But, I'm sure Schon didn't see my MR either, so I don't know if he got the big picture.
RIght now I wish I went to Schon, but I was trying to get the "Other Camp's opinion" and that is why I went to Myerson's office. Only I didn't get Myerson, only Campbell who acted like he could care less and had no intention of explaining anything to me or really any desire to help me other than suggesting distraction, and even then he didn't go into detail and said maybe that'll get you by until you are 55 when someone MIGHT be willing to give you a replacement. I've never met anyone so negative in my life. He was a real negative personality. Even if I go with the fixator I won't go with him. I don't want someone performing surgery on me who isn't hopeful it will work and in fact is pretty sure it will be a failure.
Schon is great. I have had three sugeries done by him- nothing as major as what you need- but from looking around the waiting room, he does some pretty complex operations. Sorry it didn't go well wtih campbell. Keep thinking positive thoughts.
It's good to hear you liked Schon. I wish now I had tried to make an appt. with him. I just don't know what to do right now. I'm hoping my dr. will clear things up for me when I see him next week. It would be great if he did the fixator too or if Schon did. I just feel that no one really looks at the big picture and just sees one thing wrong in my ankle and focuses on that. I've had 3 opinions and all 3 are vastly different on what they are even treating! One was arthritis, one OCD lesions, one tendon issues and subchondral cyst. I mean, what the heck??? How can things vary that much?
I am so sorry to hear that your appointment was disappointing! What a let down. We were so excited about this "D" procedure and Campbell really let the wind out of your sail ! I would have recommended you go forward with the D anyway bc of our original thought that this is less invasive and you could always go back to the more invasive procedures later if this did have a poor longterm outcome. However, at 5K a pop out of pocket...that is alot of $$.
I didnt know the term for this fixator that my doc wants to use in conjunction with the D is Distraction Arthroplasty? So thank you for that information. I did look up some information about it online and based on what you said, I do think maybe that would be your best, least invasive, way to go! Based on what I was reading, it sounds like that is a natural next step for you and you might be the perfect candidate for it? I do agree with you that I wouldnt use Campbell just for his negative attitude alone. I am with you in that bedside manor means alot to me as well.
I am about 2 1/2 hours outside of Baltimore, if you ever wanted my doc's name to consult with him. I mentioned to you before, his is a small town doc who is on the cutting edge of surgery. Very nice and great bedside manor.
I need to add that I did see where my dr. did a presentation on the distraction procedure in Baltimore. So, maybe he does do it? Never seen one in his office, but then again, it's not an everyday procedure. So, I'm REALLY holding out hope he does do the distraction and then I'll have all the opinions and options out there for one dr. to look at, the one I'd prefer to go to, my own. I seriously am not sure what to do. I want the D procedure, because to me, even without years of results, it sounds like a no brainer that it would be a good procedure. But I also think that without fixing the joint space or the arthritis on my tibia and talus, then just putting cartilage on the talus would not have that great of a long term outlook. I think I'd be right back where I am in a year. I don't want that to happen. I want to be done with this already.
Oh, they said oats was done well, just that it's all worn down again.
We were posting at the same time, I think. I might just get your dr. name if my dr. doesn't do the distraction. I'm thinking that both need to be done and what your dr. does makes so much sense. I also wonder if even just a little D, like one package or two at the most, for the bigger spots would be okay and then hope that the distraction(they were talking 12 weeks in it) would help with the rest. Questions to ask my dr. I see him a week from Wed.
If my dr. doesn't do the distraction, then I seriously don't know what I'll do. I just feel like D or not, just doing the same thing, microfracture x3 , OATS, and filling in cartilage has not worked so far. I'm not sure "D" would work as well either.
Oh, Campbell did use the full "D" name, so I know we have it all right. He just said we don't know if it lasts 1 year, 2 years, 2 MONTHS. There have been studies on animals, but not on humans long term. He really seem offended that I even asked about it. Actually, I didn't even ask. His fellow took the notes of questions I had written down away from me and handed them to Campbell.
It sounds to me that you do know what you want. You know your body, sometimes better then these docs do. We knew the D didnt have longterm studies that had definitive results. Doc C didnt tell you anything you didnt already know-duh, you have done your research! So why are they so afraid of progress?
I dont know if a "little" D will be enough for you to have a successful surgery/outcome? But my doc said my 13 x 13 mm leision was nothing compared to one he filled with this minced cartilage. He said he did an ankle that the top of the talus looked like a wave and now under scan you cant tell any difference from the real cartilage. Well that is what he is bragging anyway. So anything is possible!
I will be scheduling my appointment (i guess a sort of preliminary preop) with my doc. I will keep you posted if I learn of anything different.
Anyway, you hang in there, you will find the best procedure for you and the best doc for you. It will all come together. Even if the D with fixator procedure is not for you, you will find a doc who will make you feel comfortable explaining why and what is best for you and you will know that he is the one to go with. Listen to your gut. If you gut is telling you Doc C is wrong, then he is not right for you.
I do know my body. I've called it right on everything so far, even things that didn't show up on MR or CT. Not saying never be wrong on something, but I pretty much can feel what is going on in there.
I think Campbell was not willing to do the D procedure because it would cost so much for me out of pocket and I think he didn't want me paying for something he wasn't sure would work. So, I can kind of see his point, but then again, if I was going to pay for it and I signed off on it, then why not?
13mmx13mm is big. He said that he could do all that with one package? I'm not sure if you can use this on the tibia too. That's my biggest concern about not adding the joint space. My tibia has spots, at least, I think it is only spots, Campbell things it is just everywhere, of no cartilage there. But, I'm pretty sure that one or two packages would cut it. But I do wonder, what happens if my dr. gets in there and says, "Ooops, need another one." and there isn't any more. Or if he orders 2 and I only need 1, then I guess I'm paying a whole lot of money for something I can't use. It doesn't sound like you can return it. So many questions still. If you have to wait for a donor, and you need two packages, then is that nearly impossible to find 2 at the same time? He said you'd have to "wait for the call and then get on the schedule".
This seems to just be dragging on forever. I've been waiting on this since January. I really don't want to be in a cast/boot/fixator/crutches, any of that this summer. I was really hoping to be better by June. I've already cancelled my Paris trip, but now there's a good chance I'll be on one of those things at my son's graduation.
Do let me know what you find out, especially if your dr. also says you have to be on a list, that you can't just schedule the surgery.
I saw the podiatrist today and got the surgery on the books. I need to wait until my kids are done school for the most help so my surgery is not until June 17th. My doctor called my procedure (bear with me this is long) "Left Ankle arthroscopy with limited synovectomy's open cheilectomy (sp?) of the left ankle with debridement, drilling of osteochondral defct, Implantation of "D" cartilage with graft and jacket sheath application, and application of external fixation to left ankle for joint distraction" Got all of that!
So Kris, this is what we talked about. He said he will go in with the scope first and look around and clean things out, then open up the ankle and clean out the defect better and fill it with the fibrin gel and cover that with the cartilage, then a fibrin glue, and then a mesh is placed over that for the final healing. That mesh is not bound to anything but the fibrin glue. He will then place the fixator -which is nothing like what I was expecting. I asked him if it was a Halo around my foot and leg and he said no just 3 pins on the inside of my ankle (i think one in the tibia, the talus and calcaneous bones each) and 1rod to hold the ankle in distraction which he specifically stated was the most important part of this surgery and what the success of the surgery relied on.
Anyway, I asked him if the cartilage had to be specifically ordered to be compatible with me and he said no. He said that is the beauty of this that it doesnt have to be Homeo???? or Pheno???? something or other he said (i didnt write it down and I cant remember the actual words he was using) So it doesnt have to be compatible-which is not what you heard so I dont know what the difference is since he specifically said the D in the procedure title. So I was able to set a specific date. He also said he never has any problems getting this covered with insurance companies. So I am assuming he is creative in his billing and lets hope I am not his first that has problems with the insurance companines!
I will be staying overnight in the hospital after the procedure, but mainly for pain management. The fixator will only have to be on for 30 days of nonweightbearing then removed and full weightbearing in a boot.
The only other thing i can think of now that i wanted to share with you is that he said he did this last week to a 40 year old male with a history of an ankle fracture who now has OCD's on the talus. He said he basically covered the entire talar dome with this cartilage. I didnt ask him how many packets he had to use though, sorry. He said this guy really needs a total ankle replacement but is too young so they did this now-sort of sounded like your awful predictament so wanted to share that with you. I also dont know if he had any OCD's of the tibia filled, darn, I should have asked that for you. Anyway, when he was talking about this guy I was thinking about you so I wanted to share that with you.
I just got home. I waited 2.5 hrs to see my dr. But it was SO worth it!!!!!
Okay, I actually had a ton of time to talk to him today. I told him all my issues (non joint) and he talked about how my PTT is still an issue, and peroneals and that we could get an MRI. I was like, "Whatever" Then he asked about the joint when I was done complaining and I said, "Of course it hurts! All the time! ...... I thought that was a given so I didn't bring it up." He said, yeah, it's a given. So anyway, I forget how I got from there to talking about procedures but I did mention that in my 3 mos wait that I did go to Baltimore.
Can we say FREAKED OUT!!! Not in a bad way though. He was hurt I didn't tell him. He said he could have gotten me VIP treatment and that he knew all the guys there. He actually trained under Campbell too he said. He said Campbell is a nice guy, but just "To the point" and that he didn't know me and only had a snapshot of me. Unlike my dr. and I who I've seen for 2 years and 2 surgeries already. So he was totally cool with it except that I didn't tell him.
Anyway, so after I told him I saw Campbell, I told him what he said. I mentioned he said he'd do the distraction and did he (my dr.) do it. Turns out yes, he does!! He does quite a few, actually, but the pain, length of time in it (3 mos ) and also it isn't guaranteed insurance approval, plus the lack of super great statistics made him shy away from it. But when I told him my concern about paying $5-10K for the cartilage and then having it rub away due to arthritis and lack of joint space he said I had a point and that it made a lot of sense and he'd have no problem doing both. BUT that he wanted to run it by Dr. Schon, in Baltimore to see what he thought. He didn't think I'd need 5 packages and thought one could do a couple of defects.
So, I guess where I stand is that he is calling Baltimore to I guess, get a final; "Yeah, she isn't nuts for thinking of this" and then he'd have to see how the fixator gets coded. Also for how much each package of "D" contains or fills. He said he could get the fixator in a day, so that wasn't the issue. He still says I'd have to wait for a donor and this time he thought the shelf life was maybe a month. So I don't know how long it would take. He said they'd have to really clean out the ankle with a scope before the distractor. I forgot to ask how the tendon fix would come into play with this, but really, I'll deal with that later.
So, the plan is that I call him next week. He said I gave him lots of work to do now. And so I guess his first step is to call Dr. Schon. Then he'll talk to me about doing both for sure. Then I guess we get as much approved as possible (I'll have to copy your procedure names and ask him about it) and then according to him, wait for the call from Zimmer and then do the surgery. Since I'd be getting the full distraction arthroplasty, I'd be in the fixator for 3 mos and he said it would take up to a year to know if it worked.
I wish I had a date. I'll be mad if it is June and I could have planned my Paris trip. Maybe I should plan for June and then do Paris first. That's a thought.... I really want to be able to swim this summer in the pool and go to the beach some. Looks like that may not happen. Then of course, there is a good chance we are moving in July. But either way, I can come back here. That isn't a problem since my parents are near here. Just hate not knowing when, not even a month. You know?
Oh, I think with the donor/compatable thing, it isn't finding a compatable donor, but more A donor. Like there isn't a ton of this just sitting on the shelf all the time. I think that was his concern, that Zimmer doesn't just keep it in stock.